I often get told I ‘look so well’. This is a story about how a birthday dinner can quickly turn into a trip to A&E when you have an autoimmune condition (or in my case several).
I don’t always organise something for my birthday but this year I thought I would. I have to admit though, by the time the date came around, I wasn’t in the most sociable of moods as another autoimmune condition of mine other than the Rheumatoid Arthritis, had flared up ‘gifting’ me with shooting pains via my nervous system all over and more specifically my toe had exploded making it just a bit painful to walk. Iconically this happened the week I received my Transport for London ‘Please Offer Me a Seat’ trial badge – a week I was unable to use public transport!
So on the Saturday I got a taxi to a lovely birthday dinner with friends and family. I rested on the Sunday, then on the Monday I arranged a taxi to my neurology hospital (which addresses yet another autoimmune condition where I have the tendency to pass out). These taxi journeys were really tolling up! I had a wheelchair on arrival and my boyfriend wheeled me to my appointment, not forgetting to let go of my chair down the hospital ramp. Always a cheap thrill for us but always met with anxiety by onlookers!
My neurologist exclaimed how great I was doing since she last saw me as although I had experienced smaller episodes, I hadn’t had a full blown unconscious episode for 9 months. At my last appointment I had a 24hr blood monitor and intensive autonomic tests which revealed my heart and brain have almost an autoimmune connection. At times when my already low blood pressure should rise, it drops and in certain cases can cut out altogether causing me to fall unconscious. I was instructed to double the recommended daily intake of salt to 10mg and various other things which I’ve done my best to follow over the past 9 months.
My neurologist went on to advise beyond the medical ‘text book’ seeming actually concerned about the value of my life as a whole. She emphasised the importance not doing so much having one chronic illness let alone many. I explained that because of my illnesses I have less time in the day/ week/ month as everyone else to do activities/ run errands so sometimes I have to condense it all into the small window I have. This can just be small things to everyone else like a trip to the supermarket but is a draining physical venture for me. She understood the reasoning but said this will also make me more ill and I must acknowledge there are days I should do nothing if my body requires it. Of course she was right, and this is true of all my friends with autoimmune conditions too.
However I was touched as this is the exact opposite of what disabled or ill people are being told in society now. We are being told to push ourselves further and take physical government assessments which force us beyond our physical limitations making us more ill. She talked of how our society has got it all wrong trying to ‘do more’ all the time instead of ‘pacing more’ and how this message is particularly destructive when applied to people with chronic or autoimmune illnesses. It was so refreshing to have this recognition. Even our Channel 4 Paralympics trailer told disabled people “There’s no such thing as can’t” all to the tune of “Yes I can!” as I described in my blog Why that Paralympics trailer dehumanises disabled people. I left the hospital inspired by my neurologist and pleased my condition seemed under control!
But oh, how quick the tides change! That same night my boyfriend had arranged as a birthday super treat, dinner at a Michelin star restaurant (yes it’s ok to celebrate more than once 😉) This was such a pleasant contrast from my usual day to day hospital appointments. I pulled on a little black dress and we ordered the taster menu. Happy days eh? Not quite, 3/4 through the meal I started to feel the symptoms of my episodes. I felt tingling all over, sudden nausea and my head felt compressed. Within 10 seconds I was unable to speak, move, open my eyes or lift my head off the table. I could still hear and remember the waiter suggesting I get some fresh air and the next thing I was magically sitting somewhere else in the restaurant. Alas I had not travelled in time, that would have been awesome. It turns out whilst trying to help me outside for air I had fallen fully unconscious, luckily my boyfriend caught me.
This is because even my blood pressure is ridiculously autoimmune. It drops when it should rise, in this instance it plummeted. When the ambulance arrived the paramedics helped me onboard and my little black dress soon turned into a cold little black dress as it would not slip down for the urgent ECG. So I classily had to lift it up flashing the poor paramedics. I was glad I had worn nice pants that day.
At 11pm we arrived at A&E at University College Hospital. As I saw people being wheeled past me coughing up blood, I grew ever increasingly anxious of the potential dangers I was in, just by waiting in the corridor as I was autoimmune.
After a couple of hours waiting, my cold little black dress then turned colder as I had to whip it off completely for further ECGs and various tests. I got dressed again thinking it was surely home time. However my blood pressure was still dropping and apparently by a ‘massive amount’ according to the nurse. So a doctor led me to another room where I was hooked up to a drip. Despite being covered in a pile comprising of blankets, mine and my boyfriend’s jackets and a leopard print scarf, I was still freezing. My mum who used to be a nurse, later told me this is because my blood pressure was so low.
I was finally allowed to go home early Tuesday morning, completely exhausted and very sore from all the needles and cannula drips. I had to admit I was left quite traumatised by the whole night – as was my boyfriend who had to witness it all. It also started to flare up my RA. It was all the more ironic as my neurologist just earlier that day had been praising my progress!
When I got dressed for dinner that night I never imagined I would end up unconscious or in A&E hooked up to a drip. And the worrying thing is I know this will not be the last. I guess this is a little reminder to all of us of the implications of autoimmune conditions and illnesses – even though we may ‘look so well’.